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Terrified

About 18 months to 2 years ago I started to experience numbness in my right hand, which was steadily getting worse and became my whole arm. Weirdly I would get a strong pain in my arm if I drank any alcohol (even a small amount). I went to the doctors and asked to be referred for testing under my private medical insurance. They referred me to a neurologist who sent me for various nerve tests which were all normal. I then had an MRI which showed I had a large lesion at the top of my spine (at neck level) by this time the whole of my right arm had a numb/desensitised sensation. The doctor gave me the information I was dreading…It could be MS but is too early to say and I would need to have further MRI tests in the following months to try to determine.

I was advised that it was 50% likely to be MS and I would have to wait to see if any further lesions appeared before they would be able to diagnois MS. In half of cases with one lesion nothing will happen and either the symptoms will disappear over time or it will stay the same. In the other 50% of cases MS will develop with the development of further lesions.

This is a scary diagnosis for anyone, however having a mother with MS who is now wheelchair/housebound you can imagine my distress. I was only 28 at this point :frowning: A further MRI was set for 6 months time but I fell pregnant with my first child. During pregnancy my symptoms dissappeared and stayed away for 6 months after she was born and I started to hope I was one of the lucky ones. I had a follow up MRI when the baby was 2 months old and was told the lesion had significantly reduced in size, which was the best news I could have hoped for. The neurologist said they would not do anything further unless new symptoms appeared and to try to get on with life as normal, as this may be a one off event.

However, in the last 2 months my right arm has started to desensitise again and my concerns have come flooding back…I have not contacted the neurologist as these are not new symptoms and I am pleased to say the feeling is not as bad as before but is slowly getting worse.

I am due to go back to work in October and I am really getting upset about everything, could the reoccurance be stress related? Any words of advice? I keep thinking the worst as I have watched grown up with my mum with MS (as she has had it 20 years!) and she is severely disabled now…I am so frightened and as you can see it is now keeping me awake at night…

I don’t have any words of advice or suggestions, but I wanted to reach out with a cyber hug because you are in such a horrible situation. One thing I would say is that every case is different, so even if it does prove to be MS, there is no reason to think the course of it would be the same as it has been, sadly, for your mum. I know that’s not much comfort when you’re in limbo - and such terrible timing, too, when you have a new baby to enjoy. Sleeplessness and worry make everything seem worse…would you feel better if you talked to your GP about this?? Or would you feel better if you said to yourself that, if your symptom isn’t getting worse, you don’t need to see a GP for x number of months - and then put the worry out of your mind until then? Sometimes the head in the sand is a good approach (or is that just me??) Anyway - good luck, and hope things get better for you soon. V

Thank you very much for your kind words. When I saw the neurologist he tried to reassure me that it may not be MS but even if it is there is no reason to believe it will be as bad as it has been for my mum… Whilst i try to keep that in mind and stay positive, its very difficult not to worry. I’m taking that approach of head in the sand…unless the symptoms are worse than they were before I don’t intend to go back as I’m not sure there is anything they can do unless there is a development. Feel ongoing very frightened though…

Sometimes it could be just damage from the old lesion which has not completely cleared up yet. I would be more concerned if it was a completely different symptom like optic neuritis or a numb/weak leg or something like that.

So try not to worry too much

Moyna xxx

Thanks Moyna! I have not checked this since my last post as I have been trying to stay positive. I think you are right and it is just damage from the old lesion and have been managing to stay positive most of the time. The problem is the last week I now have numbness in my right foot…my toes and the sole of my foot feel desensitised and I feel as though I am walking differently. I have avoided seeing my parents as I do not want them to notice and worry but it is a worrying development. I am scared for the future but want to enjoy the present so might try to bury my head in the sand a bit longer?

Thanks Moyna! I have not checked this since my last post as I have been trying to stay positive. I think you are right and it is just damage from the old lesion and have been managing to stay positive most of the time. The problem is the last week I now have numbness in my right foot…my toes and the sole of my foot feel desensitised and I feel as though I am walking differently. I have avoided seeing my parents as I do not want them to notice and worry but it is a worrying development. I am scared for the future but want to enjoy the present so might try to bury my head in the sand a bit longer?